I am shocked to see that the last post was written weeks ago The days fly by with meetings, phone calls, daily tasks and some personal time-consuming matters - .a medical for licence renewal and flu jab for myself, a Lung Education Day (3 speakers, all on relevant topics) and time spent helping Lisa get her out-of-order phone fixed and begin an NDIS application. My diary has lots of other potential fun activities which have all been crossed out!
Philip has now been to two Exercise Physiology sessions with the cancer group. Both of them ended with him being totally exhausted for the rest of the day and the day after. Hopefully he will learn to pace himself better and take more rests.
He was also taken to the AIS by a friend and had a relaxing time in the spa and 'a little bit' of swimming. He finds kicking in the water an easier way of exercising his legs than using a Theraband.
Jocelyn came down last weekend and was a huge help in talking through a future care plan for which Philip was earlier assessed by ACAT. She also rang around the various care providers in the ACT to find one which had a Level 3-4 package available. (Most have already been taken up so the service providers have only Level 1 and 2 packages left.) We struck lucky with Baptist Care who had just that morning resumed a few Level 3-4 packages as previous holders 'moved on'. Baptist Care apparently have quite a good reputation in the aged care area.
One of their reps came on Tuesday to discuss possibilities, then again yesterday to discuss the budget she had emailed through and to check the house for safety (for example, cytotoxic chemicals - anticancer meds - require rubber gloves for cleaning bathroom). The budget contained no information as to how the care plan would work in terms of actual services day to day but she has promised to give us a further document with all that info. It has been an exhaustive and exhausting process, with each meeting taking 2 1/2 hours.
Philip's lack of appetite continues to be a big problem. I have found that the NutriSip meal replacement drinks can be made more palatable by making smoothies with them, adding high protein milk, Sustagen, plain yogurt and banana to the strawberry one and concentrated coffee to the chocolate one. We have ordered a box of Endure which is similar but has a coffee flavoured option and hopefully is less sweet.
There are a few other things he can eat. But the fact that opioids zonk him out, plus continued back pain which requires him to lie down, means that he is not up and about but sleeping. Also Tarceva which he takes at night has to be taken on an empty stomach, so no nibbling after his evening meal.
A recliner chair and a wheelie-walker, both on loan from ACT Health, are to arrive on Tuesday. They will both be helpful, I believe.
On the pain-management front, his GP and the 'Queen of pain' nurse practitioner from TCH (and no, she doesn't wear black leather and wield a whip) are at war. His GP thinks Fentanyl patches are the way to go with Endone for breakthrough pain and Jurnista turns you into a zombie; while the TCH pain specialist says that Fentanyl does not work well if you don't have fat beneath your skin and they don't work anyway on (spinal) nerve pain which requires Lyrica. Philip does not seem to have done well with either regime.
However just this afternoon the pain management nurse practitioner in the Home Based Palliative Care program rang to arrange an appointment. I asked to postpone it for a few weeks until Regime #2 settled in, but with the subsequent news of Philip's GP's opposition, perhaps we will get this 3rd opinion by way of adjudication.
It would be marvellous to both have the pain managed and to have a degree of wakefulness in order to do things. Listen in to the next enthralling instalment ....
No comments:
Post a Comment